It's come back - :(

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Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

It's come back - :(

Postby Jess83 » Sat Dec 19, 2020 7:48 am

Hi All,
It's been a long time since I have posted.
Life has been cruising along for the past 6 years, running around after a energetic 6 year old, working and just enjoying life.
And now it's all come to a crashing halt again because after almost 8 years, my cancer has come back.
What we thought would most likely be a hemorrhoid has actually turned out to be a cancerous 35mm growth right next to my original TEMS resection.
They scariest part is I had a clean scope in August 2019.
So I'm now on the roller-coaster of tests and meeting, working out a treatment plan.
They are thinking I have lymph node involvement so most likely at Stage 3.
Met my radiologist on Friday and will meet my oncologist on Monday.
Just hoping some of you might be able to provide some advice on what kind of questions I should be asking my treatment team?
Is there anything you know now that you wish you have know when you started treatment?
Trying to be positive but I am crapping my past!!!!
Appreciate any help you can offer :)
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

DarknessEmbraced
Posts: 3545
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It's come back - :(

Postby DarknessEmbraced » Sat Dec 19, 2020 3:33 pm

I'm so very sorry your cancer is back and I hope you get more information soon.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

stu
Posts: 1429
Joined: Sat Aug 17, 2013 5:46 pm

Re: It's come back - :(

Postby stu » Sat Dec 19, 2020 7:00 pm

So sorry to hear that . Such a long time however it still sounds as though this is treatable. I wish you did not have to go through it . I hated when my mum hit such bumps on the road but it lead to good outcomes and many good years ahead .
I wish the same for you .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 662
Joined: Fri Apr 06, 2018 11:40 am

Re: It's come back - :(

Postby boxhill » Mon Dec 21, 2020 8:02 am

Well, that stinks. Of course, there have been a lot of advances since your first bout. Genetics, for one. Has your tumor been biopsied yet?

It sounds like you may be in for chemo this time, but can you have TEMS again?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Mon Dec 21, 2020 11:01 pm

Thanks for the replies.
We had our appointment with the oncologist and surgeon yesterday and unfortunately the news was not what we hoped. I now have a met on my adrenal gland. They didn’t see it on the original CAT scan as it’s an unusual place for spread in rectal cancer.
So I’m now joining the Stage 4 club - bugger!!!!
They are still really confident that as it’s a single met they can deal with it and cure me, but I think I’m in for a rough few months.
I’m starting FOLFOX on the 29/12 - any tips?
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

kandj
Posts: 306
Joined: Sun Sep 27, 2015 11:29 am

Re: It's come back - :(

Postby kandj » Tue Dec 22, 2020 1:21 pm

I am so sorry you have had to join the shitty Stage 4 group. My DH has also has a met on his adrenal gland. There are a few others here. His has been a pin to deal with. I highly suggest having it taken out surgically if that is an option for you. DH had his treated with ablation, that had to be stopped early due to irregular EKG readings. Then it came back, so he had radiation done on it. So far so good with that one. Had he not had several surgeries before hand I think they would have surgically removed it. I am sure lots of others will chime on on FOLFOX. It can be a rough go. I have only been on the caregiver side of things.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again
9/2020 SBRT on Adrenal Met 11/2020 New liver met to deal with

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's come back - :(

Postby Claudine » Tue Dec 22, 2020 1:35 pm

My husband also had an adrenal met (left). After 18 rounds of Folfiri and Avastin, which shrank it by half, he had laparoscopic adrenalectomy last February. The surgeon was very happy, able to remove the whole thing cleanly. Recovery was quite smooth. Definitely something to look into!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's come back - :(

Postby Claudine » Tue Dec 22, 2020 1:39 pm

Here’s a link to the post I created about adrenal mets :)

viewtopic.php?f=1&t=63970&hilit=Adrenal
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Nor Cal
Posts: 7
Joined: Sun Dec 06, 2020 8:18 pm

Re: It's come back - :(

Postby Nor Cal » Tue Dec 22, 2020 1:53 pm

Jess83 wrote:I’m starting FOLFOX on the 29/12 - any tips?


I've been on FOLFOXIRI so not exactly the same, but the oxi is the hard one for me. You may want some gloves handy for reaching into the fridge for a couple days post chemo. If you're going home with the 5-FU party ball, make sure you shower day of chemo because you won't have the chance for a couple of days once you're hooked up. And if your taste buds start to go sour, I'd avoid you favorite foods as the chemo may ruin them for you. Oh, and you'll probably want over the counter meds ready for bowel issues.

The neuropathy is obviously the big worry, but I've found that exercising my fingers and toes regularly really helps.
Dx June 2020, stage IV, w liver mets. M, age 50. Left lobe near complete takeover by tumor. Multiple mets on right side. Right-sided colon tumor. BRAF mutation. CEA 39.5
7-11/20 8 cycles FOLFOXIRI (plus Avastin cycles 2-6)
CEA 2.9
12/20 radioembolization (right lobe)
12/20 1 cycle FOLFOXIRI
1/21 chemoembolization (left lobe)

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Tue Dec 22, 2020 3:36 pm

boxhill wrote:Well, that stinks. Of course, there have been a lot of advances since your first bout. Genetics, for one. Has your tumor been biopsied yet?

It sounds like you may be in for chemo this time, but can you have TEMS again?


Thanks boxhill. Yes, they have checked for genetics last time as my grandmother had 3 bouts of bowel can starting in her 40’s. Out of her 8 siblings, 3 also had bowel cancer. They found a mutation on the MHY gene, but it wasn’t one of the usual mutation they associate with that condition. They said it was unknown if this was the factor causing my polyps. This was back in 2013.

I’m definitely in for chemo now, but surgeon has said I will have to lose my rectum - I’m ok with that, he keeps trying to kill me so I don’t think we should be friends anymore :)
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Tue Dec 22, 2020 3:42 pm

Claudine wrote:My husband also had an adrenal met (left). After 18 rounds of Folfiri and Avastin, which shrank it by half, he had laparoscopic adrenalectomy last February. The surgeon was very happy, able to remove the whole thing cleanly. Recovery was quite smooth. Definitely something to look into!


Thanks so much Claudine! The link was very helpful! Hoping to hear back from my surgeon today with the official plan of action, the plan is to shrink it and remove it but they were trying to work out the best order to do things.

Has he noticed any changes due to its removal?
I was suffering from terrible anxiety for the past 6 months and was wondering if the tumor might have had something to do with it?
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Tue Dec 22, 2020 3:48 pm

kandj wrote:I am so sorry you have had to join the shitty Stage 4 group. My DH has also has a met on his adrenal gland. There are a few others here. His has been a pin to deal with. I highly suggest having it taken out surgically if that is an option for you. DH had his treated with ablation, that had to be stopped early due to irregular EKG readings. Then it came back, so he had radiation done on it. So far so good with that one. Had he not had several surgeries before hand I think they would have surgically removed it. I am sure lots of others will chime on on FOLFOX. It can be a rough go. I have only been on the caregiver side of things.


Thanks Kandj. I did wonder about radiation for it, but hadn’t really had a chance to ask yet. They said they will definitely be taking it out, we just don’t know at which point.
Not looking forward to chemo, very worried about the side effects, but have my fingers crossed I can get through it reasonably.
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

Claudine
Posts: 460
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's come back - :(

Postby Claudine » Tue Dec 22, 2020 5:03 pm

Has he noticed any changes due to its removal?
I was suffering from terrible anxiety for the past 6 months and was wondering if the tumor might have had something to do with it?


No, I don’t think so - from what we’ve been told, one adrenal gland is enough, that’s a good thing there’s redundancy in our system! Yet thinking about it, before we knew about the met, he wasn’t feeling very good. Could have been chemo (he was on Xelox, which didn’t work, since the met grew while he was being treated), but could also have been related to the impaired adrenal gland.
In his case, radiation was rejected because of the risk of “friendly fire” - if I remember well, he had a loop of intestines very close to the met.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 51
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 12/17: nothing to report

Jess83
Posts: 25
Joined: Sun Dec 02, 2012 7:06 am

Re: It's come back - :(

Postby Jess83 » Wed Dec 23, 2020 6:25 am

Nor Cal wrote:
Jess83 wrote:I’m starting FOLFOX on the 29/12 - any tips?


I've been on FOLFOXIRI so not exactly the same, but the oxi is the hard one for me. You may want some gloves handy for reaching into the fridge for a couple days post chemo. If you're going home with the 5-FU party ball, make sure you shower day of chemo because you won't have the chance for a couple of days once you're hooked up. And if your taste buds start to go sour, I'd avoid you favorite foods as the chemo may ruin them for you. Oh, and you'll probably want over the counter meds ready for bowel issues.

The neuropathy is obviously the big worry, but I've found that exercising my fingers and toes regularly really helps.


Yep, the neuropathy is what is probably scaring me the most.

My treatment situation is rapidly changing, I may now be going straight to surgery to get the adrenal tumor removed. Speaking to another surgeon tomorrow. They are hoping that it may be a benign tumor unrelated to my primary. Fingers crossed!

What a rollercoaster 8 days it has been, but they are trying so hard to get me a plan before Xmas. Feel like I’m in good hands :)
Stage 1 - 29 yo in Australia
Diagnosed whilst pregnant
18mm Polyp - T1 NX M0
May 13 - TEMS procedure - Clear margins!!!
Feb 14 - Had a baby!
June 14 - clean colonoscopy & PET
June 15 - clean sigmoidoscopy & PET
July 17 - clean colonoscopy
August 19 - clean colonoscopy
Dec 2020 - It's back :( 35mm tumor next to original resection
Confirmed Stage 4 with met to adrenal gland
Surgery to remove adrenal gland/tumor scheduled for 8th Jan

User avatar
waw4
Posts: 841
Joined: Sun Sep 12, 2010 8:44 am
Location: Durham, NC

Re: It's come back - :(

Postby waw4 » Wed Dec 23, 2020 11:31 am

Unless I missed it, you may want to discuss having a port implanted near a collarbone for the infusions as they can be hard on the veins.

I had 9 rounds of FolFox via a port in 2010 for Stage 3 and still have neuropathy in my feet and find it harder and more uncomfortable to walk and must always wear socks inside and shoes/sandals outside.

12 rounds is the standard course of FolFox treatment, but there was at least 1 study back then whose result showed 9 rounds was as effective as 12, so you may want to discuss this with your oncologist. I chose 9 to try and minimize my neuropathy risk.

-Bill
Bill's Colonoscopy 6/29/10; Dx Stage I or II
Surgery 7/15/10; Dx Stage III,15/32 lymph nodes
FOLFOX4 start 9/14/10; end 1/20/11 (9 tx)
Grateful for 2nd Chance NED time!


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